Multiple Sclerosis and the Self
1998 First Web Reports
Multiple Sclerosis and the Self
Anne FredericksonMultiple sclerosis is a devastating disease that attacks the mylination on the axons of neurons, causing many problems. Patients with MS must worry about how they will get around, see, and manage everyday activities. However, probably one of the most devastating and stigmatizing aspects of the disease is its effects on one's cognitive capabilities. This in combination with its paralyzing effects can produce a diminished sense of self in the patients as well as a diminished sense of being in others.
The sensory-motor effects of MS can be very debilitating. According to the National Institute of Neurological Disorders and Stroke (NINDS). MS often begins with numbness in the legs and hands. This, along with weakness and spasticity, is one of the hallmark signs of MS. As the disease progresses, many patients suffer from other motor problems associated with the weakness and spasticity. Patients may have trouble with coordination and balance. This may eventually result in paralysis, either partial or full. Another symptom of MS is visual problems. According to Rose et al., patients who show visual problems may do so in a variety of ways. They can range from blurred vision to blindness. These problems are compounded by exposure to heat. In addition, fatigue and stress can also cause the symptoms to worsen. Fatigue is often a unavoidable consequence of the disease. People with MS often spend much of their energy simply trying to control their movements. They have little energy left for other activities. This lack of energy causes further worsening of symptoms which can cause further fatigue. This may leave the patient feeling that any attempt to be active is futile if not counter productive. Inactivity can lead patients to shut themselves off from the world.
While the motor symptoms are the most visible, MS patients also exhibit some cognitive problems. The MS Center lists some of the most common problems of cognition as problems of attention and concentration. Patients often have problems concentrating on more than one thing at one time. They are easily distracted, and when they try to get back to the initial activity, they often have to begin over. This distraction can then affect their memory of those things because it may fail to be encoded in memory. If the information actually enters their memory, patients may have problems retrieving information. In addition, they may also have problems with speech. Britell notes that while patients may have problems thinking of the right word, more often they have problems forming words and putting them together. In addition to physical visual problems, patients may also have perceptual problems. Britell gives the example of looking for a pair of socks in a drawer but being unable to find them even though they may be right on top. Patients are unable to make sense of visual patterns.
The decline in motor control can effect one's sense of self. In the case of motor problems, there is a sense of loss of control of one's body. Patients may feel that their limbs are no longer a part of them simply because they can no longer exert the control over them that they used to exert. It can be frustrating for patients because they are no longer able to engage in everyday activities such as going grocery shopping let alone engaging in more taxing activities. While this may be hard to deal with, it becomes especially difficult when one considers the stigma that society attaches to the inability to control the body. Because physical behavior is so intricately associated with the brain, and the brain with mental functioning, people often associate a failure in motor ability with a failure in mental functioning. They assume that a slowness in action means a slowing of thinking or intellect. This is difficult for patients for two reasons. First, it is saddening to realize that others are treating you differently in order to accommodate your non-existent mental problems. Secondly, because the attitude is so pervasive, patients may actually believe that their motor problems are signs of mental problems also. They may interpret these problems as failures on their part rather than biological processes for which there is little help and no cure.
While the motor problems can limit one's sense of self, the cognitive problems can be devastating to it. Motor deficits affect the body but there is still a sense that the mind is intact. However, when one experiences cognitive deficits, that sense begins to disappear. Every attitude that society associates with a lack of motor control also applies to cognitive dysfunction, except now, some of it is true. The mind is one of the most important indications of individuality. No two people have exactly the same thoughts, emotions, personality traits, or even soul. People guard their mental functioning closely. However, when the cognitive problems of MS set in, they may find that they have lost hold of that which they consider to encompass "self." Britell notes that most people still prescribe to "a medieval way of thinking" in believing that a "person with cognitive dysfunction is spiritually damaged, or lessened in some basic essence of humanity." This is a very dangerous mode of thinking for the patient. At a time when they are losing control of their body, they do not also need the extra burden of believing that they are also losing control of their mind. However, Britell acknowledges that a failure to remember or concentrate is not a sign of a decline in intellect. In fact, a decline in intellect is one of the rarest cognitive dysfunctions. She notes that people with MS retain their abilities with regard to intelligence tests. They are able to reason and solve problems. Just because they are slow to respond to a question does not mean that they do not know the answer. It is rather a sign of other problems. They may not be able to connect the thought with appropriate words or may be having problems concentrating on the question. Slowness is a failure of speed rather a failure of ability.
MS is a confusing disease. The causes are unknown. There is no absolute treatment. There is no known cure. However, in addition to all of this, the actual symptoms are extremely varied in kind and degree. This makes it very difficult to know how to attempt to treat patients with MS physically. Psychologically, treatment is also very difficult simply because the disease attacks the very core of the individual. How do you bandage a diminished sense of self? Without remission of the disease, it is impossible to return what patients lose due to the demylination of their neurons. There are "exercises" that different patients (on the Neurology WebForum) have suggested to maintain cognitive functioning, but like most treatments for MS, its effectiveness is unknown. Britell suggests that the best things for patients is understanding (on their part and on the part of those around them) that there are going to be limitations on their behavior, both physically and mentally, but this is in no way as sign that they are less of a person than anyone else.
WWW SourcesBritell, C.W. M.D. "Cognitive and Perceptual Problems in MS."
MS Center. "Neuropsychology."
National Institute of Neurological Disorders and Stroke. "Multiple Sclerosis: Hope Through Research."
Rose J. et al. A lecture outline on Multiple Sclerosis.
Comments made prior to 2007
for a wonderful article! Having it spelled out so eloquently makes it
so much easier to deconstruct and be a different-but-happy-nevertheless
person again! I myself used to publish as a creative writer with an
academic degree in Holland, moved to the UK around the time I was
diagnosed (1996), and now live in the UK Cotswolds with my fantastic
wife and 3 wonderful (step)children in a beautiful and fully adapted
cottage right on the edge of the Evenlode Valley. I've lost a lot but
who cares? I'm not sure I entirely agree with you on the intellect
issue - I feel that I'm less intelligent, that I can't converse with
people like before. It's not just speed, after all. I'm making wrong
connections, stupid and illogical decisions, and I often feel
embarrassed. And it's at that point that I begin to wonder: what
exactly makes up 'intellect'? What does it comprise of? I used to be
rather extrovert, with lots of friends; I did stand-up comedy at one
time and I've always been very outspoken and opinioniated, but nowadays
I stay indoors and I know very few people (and vice versa). Apart from
falling victim to my forgetfulness, friends were upset by my regular
outbursts and disproportional responses. I'm simply an idiot nowayas.
At times, my moods swings like mad, from elated and overly enthusiastic
to, well. I have upset a lot of people with my behaviour. People from
my past very rarely contact me to see how I'm doing and I can't blame
'em. I've said some horrible things in arguments. Me and my big mouth -
perhaps nothing to do with my MS; perhapse I'm just an arse. It took me
two hours to write this reply ... Anton Verstraete, 26 April 2007